What makes someone disabled? What makes me disabled?
Surely it’s the wheelchair?
I was diagnosed with a physical disability as a teenager, but I could walk and appeared able-bodied for some time after. Despite slowing down physically and doing things differently, I didn’t see myself as any different, or as disabled, and for the most part, most other people didn’t either.
I remember my introduction to the wheelchair.
I didn’t need it.
I definitely didn’t want it.
My instinct was right.
When you begin using a wheelchair, the world changes around you. I remember the first time I left the house. People looked at me differently. People spoke to me differently. It’s hard to get used to those looks.
That awkwardness.
I woke at 3.57am. I pressed the remote of the electric bed to readjust my position. Nothing happened
The world sees the wheelchair as a symbol of disability. The wheelchair seems to tell society that I am disabled. I quickly learned that the wheelchair was actually my means to freedom and to independence and mobility. I was still the same. The wheelchair actually opened up the world again. It makes us able. Able to go to school. Able to work. Able to get away.
No phone reception
I was away for a few days with my family over Christmas. We rented a house in Kerry near the sea. I rented an electric bed and a hoist. There was no phone reception. That was an added bonus – until the last night.
I woke at 3.57am. I pressed the remote of the electric bed to readjust my position. Nothing happened. Being half asleep, it took me a minute to register the lack of noise of my electric wheelchair charging. The absence of the orange light to indicate it was charging. Total silence and total darkness. I took out my phone to ring my parents or sisters. No phone reception. No electricity.
I woke up because I needed to move. I sleep with the precious remote in my hand and use it to sit up and to readjust my position many times during the night. I kept pressing the button. I needed to move. Stop thinking about moving. Time goes slowly at 3.57am.
Plenty of time to think.
I am completely dependent on the aids and appliances around me, today and every day
I thought about Gina, my assistance dog, at the left hand side of the bed. (If I was home, she would have pulled on the string to open the door to alert someone. But, Gina was on holidays too!) I thought about my electric wheelchair to the right. I thought of the hoist beside it.
All these symbols of disability.
Completely dependent
Lying on your back not being able to move at all makes you completely aware of your disability. I am completely dependent on my sleeping family upstairs who I know are going to come to my rescue soon. I am completely dependent on the aids and appliances around me, today and every day. All I’m thinking is – I can’t wait for my electric bed to come back to life. I can’t wait for the lights to come on. I can’t wait for someone to get me out of this bed. I can’t wait to be sitting in my wheelchair. I’m thinking about freedom, mobility and independence.
An hour passes.
Slowly.
Imagine being stuck in this bed all day. I think about today's Ireland. Disabled people my age and younger living in nursing homes because of insufficient personal assistance hours. Some 42 per cent of people who are receiving a PA service are in receipt of between one and five hours per week. Or 42 minutes per day. I think about the children on waiting lists for wheelchairs. I think about the waiting lists for crucial physiotherapy services in the community. I think about the fact that people with disabilities are four times less likely to be employed and that 31 per cent of working-age disabled people are at work, compared to 71 per cent of those without a disability. I think about the person who asked me how I became a solicitor with "the wheelchair" and the person who told me I was very lucky to get a job "with the wheelchair". I think about the solicitor in the Four Courts who assumed I was the client – in the wheelchair. I think about the inaccessible court rooms, the lack of accessible taxis, the steps, the inaccessible bathrooms. I think about all those looks and all that awkwardness.
These are the things that disable people.
Not the wheelchairs.
Still the same
I went to Kerry as a child on holidays. I didn’t have a disability. I jumped into the sea and hopped out of the bed in the mornings. A lot has changed, but I’m still the same. It’s a fact that most of us will encounter disability in our lifetimes, whether through injury, illness or simply through the process of ageing. I didn’t think ever think about that. But I think about it as I lie in bed. I think about all the people lying in beds in Ireland – waiting for PAs to come and help them out of bed. Waiting for wheelchairs – to get to school or to go to work. Or to the doctor. Or to the shop.
In 2019, let’s really think about what makes us disabled. When you begin using a wheelchair the world changes around you. We can change how the physical and social world accommodates disabled people.
Let’s think about that in 2019.
Let’s focus on ability.
Platform Series: Aisling Glynn
1) Weren't they good to give you a job
2) 847 in Dublin, zero in west Clare
3) It's impossible to forget
4) I'm disabled . . . by society
5) Wheelchair versus plane
6) The number 42
7) What makes us disabled
8) Life's challenges
9) I don't think I'd get up in the morning